23 things and they call them all pain.


[Title inspired by the quote “Did I ever tell you that Mrs McCave had 23 sons and she called them all Dave?” -Dr. Seuss. The number 23 is irrelevant.]

This isn’t the post I wanted to write. I have several important ones I’m working on and then this one (on a topic I have covered already some time ago) goes and pops out. That seems like it’s always the way of things. Oh well. It’s on a topic that I recently attended a talk on (pain in people with developmental disabilities) that had a lot of important things to say. And this is one component that wasn’t in the talk but that has had a major effect on my life. 

So I’ve lived with chronic severe pain of several kinds my whole life. One of the hardest things, and a barrier to pain treatment, has been learning the unifying concept of pain in the first place. 

To me, every kind of pain is separate and unique. It would never occur to me to put them together if it weren’t for learning, often from other people, what they were. (This has had serious and sometimes life-threatening consequences.  I’m sure anyone who has read much of this blog knows the stories.)

So I’ve gone through my life learning them one by one. Here’s a list of many things that all feel separate to me:

Summer thing (central). Trigeminal neuralgia (background).  Trigeminal neuralgia (attack).  Occipital neuralgia (background).   Occipital neuralgia (attack). Hypermobility-related overall joint pain. Tendinitis. Muscle ache. Muscle spasm. Heartburn. Weird neck nerve stuff (can be felt anywhere in my body depending on neck position). Upper back/neck pain.  Lower back pain. Migraine (both head and other body parts). Chronic daily headache. Seizure aura (dryness to the point of pain). Stomachache. Sore throat. Intestinal pain (especially from diarrhea or constipation). Postcholecystectomy syndrome (feels like gallbladder attacks despite lack of gallbladder). And the many things I doubtless don’t remember.

Now keep in mind that for many of the things listed above, even “one” of them might sometimes cause six or seven distinct sensations that I would never think to put together, and that one kind of pain can feel different to me just based on which body part feels it. And those are just kinds of pain that happen without an immediate injury, and kinds of pain that I happen to experience either regularly or constantly. And even excellent communication about one means nothing about another.

So today, I was recovering from the evil flashing/blaringness that is the building fire alarm. When I noticed that my ability to write and think was being greatly reduced by a sensation on my body. At first glance, it just felt like something lightly brushing against the skin of one side of my body.  Not anything I would ever equate to pain. 

But then I remembered a story I heard about the severe abdominal pain of an intestinal blockage and how it felt to an autistic person. He said that he, who is an incredibly happy person who is never depressed, suddenly felt suicidal and like he would do anything to get away from… some weird sensation or another that felt rather mild on a conscious level and that didn’t resemble any kind of pain he was used to. It was only after a nurse administered pain meds that, by the contrast, he could tell he had been in excruciating pain. 

So he told me to remember this:  Pain is any physical sensation experienced as uncomfortable. Especially if in connection to that sensation you are experiencing limitations in everyday functioning, out-of-character negative emotions, a desire to do anything to get rid of the sensation, or other things like that. 

So I thought it through. I was being limited in my ability to concentrate in ways I would normally put at a 6 or 7 on the 1-10 pain scale (which has been painstakingly drilled into my head over a period of years until I almost understand it). I was trying to avoid my body more than usual. And I couldn’t get the unpleasantness of the sensation out of my head. When I tried to connect to my body a little more, it did indeed feel like there was pain underneath or tied in with the brushing sensation. And when I took my medication… well I’m able to write this, and I wouldn’t have been half an hour ago, and the sensation started keeping it down to a dull roar instead of dominating my attention. 

This isn’t the first time I’ve felt that. But it’s the first time I have ever associated it with pain. So now I have a whole new kind of pain to add to my list of “sensations that all get called pain no matter how different they feel”. 

But despite that library of different pain sensations in my head, it’s not like this is automatic. The hospital around here used pain as one of the vital signs. This is all well and good and saves lives as long as they take patients seriously. But it’s a major headache (no pun intended) for me, since I have trouble localizing and identifying pain at the best of times. 

I just recently got my latest nerve blocks done. They make you fast beforehand, so I was already very floaty and disconnected and light-headed. And the conversation goes something like this:

NURSE:  “Do you have any pain?”

ME:  “Probably. Most likely actually.”

NURSE:  “Where is it?”

ME:  “Please no. You’ve got to be kidding. I haven’t eaten. I don’t even know where my body is, let alone where the pain is.”

NURSE:  “So you don’t have any pain?”

ME:  [inwardly going “oh for the love of… how can I possibly explain this when I haven’t eaten and don’t have any words?”]

NURSE: “So you don’t have any pain?”

ME:  “Seriously I don’t know how to explain this. I do have pain but I don’t know how to interpret the locations in my body.”

NURSE:  “Okay, but can you at least tell me where the pain we’re treating today is?”‘

And after that everything went okay. But at the time all I felt were a whole swirl of sensations, every sight, sound, touch, smell, taste, etc., including pain, just jumbled together, sometimes blended, and not at all possible to locate, because my body itself was just a series of jumbled sensations in among the others. It’s really hard to explain to people why I can be in very intense pain and both be unable to locate it on my body and unable to perceive it as separable perceptually or conceptually from the landscape around me.  And it’s in turn hard to explain why this is normal for me to lose track of everything (pain or otherwise) in that jumble, and that pain isn’t a special case there, it’s just something that adds to the confusion. This doesn’t mean I don’t feel them or they don’t affect me.  It just means that conscious understanding of them is a serious struggle. 

Unfortunately this often means that at the time when locating and describing pain is the most important, it’s the least possible.  When they ask about pain at doctor’s appointments I usually give them a rehearsed answer. Trying to map out all the overlapping kinds of pain, locate them, describe them, and give them all numbers, is impossible. Even when I feel like I have a body, the sheer number of kinds of pain prevent me from treating them as if they are all one thing. To me they’re just many and varied unpleasant sensations with nothing much in common, spread out over my entire perceptual landscape.  

Edited to add:

I am starting to notice a pattern here. Or maybe simply noticing it yet again while forgetting last time I noticed (not hard to do at the best of times and right now I have a migraine). Very many of the mismatches between me and standard expectations are extreme mismatches between my supposedly-native language and my experiences of the world. People always talk about language shaping our experiences. Maybe it can do that sometimes. Sometimes when it seems from the outside that language has shaped my experiences, it’s really that language has shaped my while-using-language responses (reason #5278 I distrust lots of autism research that relies on forcing us to use or understand language). 

But then most of the time it feels like language is in one corner of a room, and my experiences not only take up the entire rest of the room, but much of the world outside that room. And yet everyone focuses on that one corner and acts like everything else doesn’t exist. 

So people focus on a definition of pain in a particular language and culture. And completely miss that I have no reason to link together dozens of seemingly unrelated experiences just because people here use one word for all of them. Sapir-Whorf my ass. 

This is why even the most accurate and carefully-chosen words always feel like lies to me.  Even the list of different kinds of pain is a list I chose because the diagnostic terms are the only ones I know — I have only limited ability to describe the actual kinds and boundaries of the various experiences I have that all get called pain, as I experience them, so I borrow someone else’s words for the conditions that cause the pain. And people wonder why I continually express frustration and exhaustion when it comes to language. 


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

6 responses »

  1. there is this word ( very general and maybe an abstraction) : discontinous.

    Even thought i’m not autistic, i feel very discontinuous these days, much more than continuous. And it’s not so much of a problem for me, the problem is that a lot of people don’t seems to think about themselves, or about the life they live, as a discontinuous thing as much as a continuous stuff. Of course there is both of a continous and a discontinous part in life, but the discontinous part of it seems very unrecognized.


    merci, à bientôt.

  2. I’m autistic with chronic pain, too and I agree that doctors visits trying to talk about my body, especially pain, suck. Especially the pain scale.

    I try to tell them “it’s a significant amount of pain that has a severe impact on my quality of life and impairs my ability to do everyday tasks like washing dishes, bending over, or lifting moderate loads.” I’d rehearse the line! You’d think that would be enough for them because it quite clearly says “this is a problem” but they seem to want to know how much I think it hurts maybe to see if they think it’s a problem, too.

    Last month I tried telling my doctor that my background pain levels are maybe between a 2 or a 3 which simply resulted in my doctor completely dismissing my chronic pain. Of course, I consider a 5 to be unbearable amounts of pain where I have to stop it’s just that I can imagine and have experienced pain much, much worse than that in pain flare-ups.

    It took over 20 minutes in a 30 minute appointment to convince her that yes, I actually am in legitimate amounts of pain to treat and that I’m not just complaining about being tired. In the end she marked my background levels of pain between 7-10…

    And of course talking about your body and your pain is a nightmare. I honestly don’t pay attention to whether or not my fingers are tingly when my shoulder is flaring in pain and maybe it’s not easy for me to tell. Or the time that she did the neuro workup and asked me if two sensations feel the same and I say “yesmaybeno what do you consider feeling different?” and she takes it as a no even though it should have been a yes and doesn’t accept my trying to explain my answer because clearly if I was having difficulties with that it would have been obvious to me instead of “being a qualitative difference but not quantitative and is it because you accidentally touched me differently on each side?”


    And I left with what amounted to a “you’re clearly not that bad off and if you were really that serious about it you would loose weight” instead of ordering or trying to actually diagnose WHY.


  3. Oh not the “does either side feel different” question. Answering accurately on that one has got me into all kinds of trouble.

    BTW I just went through 200 spam messages and found your and someone else’s comments there. Meanwhile 16 spam messages made it to my regular comment area.

  4. Amanda,

    Sorry to hear about your pain. :(

    Perhaps it would be helpful to keep a printed paragraph explaining your difficulty perceiving and describing pain. If you can think of any ways for medical professionals to get the information they need to help you, you could include that as well. That way, the next time someone asks you pain-related questions, you could just hand them the paper.

    Thinking of you,


  5. Just an idea…..even prior to having any procedure done that involves dealing with pain….have a session for telling the nurse or whoever what pain is being addressed by the actual procedure….all questions involving pain should be dealt with before you have to fast…is what I mean. Is that possible?

    I’m sure there are other things besides not eating that cause your body to become a jumble of sensations…..do you ever feel that all you are is a pair of eyes watching the world…..and the rest of your body doesn’t exist? Is that kind of what you are describing in this blog post? Ivan sometimes feels that way while driving down a straight road….

    And there is a lot of information on your blog about your perceptions of things so if you were able to write a scripted summary of it for all medical people you come in contact with….you might not feel like going /headdesk each time someone asks you to explain something.

    Oftentimes people are extremely uncomfortable with things they cannot make head or tail of.

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